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Posted 5/25/2009 4:27 AM (GMT 0)
I'm pretty much in the same boat as you are. I've had 3 remicade treatments. Fourth one in mid June. I talked to my GI regarding imuran and remicade and he said that studies have shown that those two at the same time aren't a good idea. I know imuran takes about 3 months to see effects and is the cheaper solution. You should start to see results fairly quickly with the remicade. It stays in you for awhile and I'm told that you start to see greater improvement after 3 to 4 infusions. Unfortunately this isn't the case for everyone. I've started to flare up again after seeing improvement from 2 infusions. I'm going to see my GP this week to find alternatives and definitely going to get a food allergy test. If nothing good comes out of it my last ditch effort is to see a naturopath. Hopefully something good comes out of it. Try reading as much as you can about diet. There's some foods I won't go near anymore cause it causes irritation. Good luck!


Diagnosed with Pan colitis Feb/09
10mg prednisone
3 remicade infusions
Posted 5/25/2009 4:37 AM (GMT 0)
One other thing. I originally lost 50pds in a couple months. My GP told me to start drinking boost. I told him I was worried about the sugar content but he said it absorbed by the small intestine so shouldn't cause irritation. I prefer the strawberry with extra protein. I avoid the chocolate cause chocolate doesn't sit well with me.
Posted 5/25/2009 4:40 AM (GMT 0)
$100 pills that are suppose to get rid of UC? If there is a money back guarantee you can probably sign us all up! lol
Posted 5/25/2009 5:06 AM (GMT 0)
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  

Post Edited By Moderator (Judilyn) : 5/26/2009 12:21:58 AM (GMT-6)

Posted 5/25/2009 7:04 AM (GMT 0)
1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  

Post Edited By Moderator (Judilyn) : 5/26/2009 12:22:58 AM (GMT-6)

Posted 5/25/2009 2:23 PM (GMT 0)

I think I ll go with the surgery , I think its the only real solution in my case.... I am meeting the surgeon tomorrow will know more then.

1. No discussion of any illegal activity or threats of violence. (ie. illicit drug use, including medical marijuana use, threats of suicide or self-injury, or threatened or intended physical harm).  

Post Edited By Moderator (Judilyn) : 5/26/2009 12:23:56 AM (GMT-6)

Posted 5/25/2009 8:24 PM (GMT 0)
John...you assume it's not on the internet at all?

It's a forum rule....one thing that won't change, so try not to get this thread locked.


PPC...keep us updated as to your appointment.
It's a big step, but one that many of us will face. All experience regarding surgery is good for us to hear.

quincy
Posted 5/25/2009 8:52 PM (GMT 0)
Thank you Quincy, I will keep you posted. My situation is getting worse today, I hope I will be ok until my appointment tomorrow morning... If not I'll end up at the ER and well see what happens from there... Just trying to hang in there now, I am so tired and weak I think I have reached the point where I will say yes to the surgery right away...
Posted 5/25/2009 9:00 PM (GMT 0)
Im very sorry to hear this PPC. I wish you my very best.
Posted 5/25/2009 10:05 PM (GMT 0)

For those that want to propose treatments that go against the forum rules, and for those that think anything should be able to be discussed, I encourage you to create your own website for the support of UC.  Unfortunately this forum has policies that prohibit discussing the use of illegal drugs.  Start your own website and you can have the freedom you want to share your ideas.

Sue

Posted 5/26/2009 12:08 PM (GMT 0)
I hope you got some relief by now. Please let us know how the dr appointment goes.
Posted 5/26/2009 1:03 PM (GMT 0)
HI everyone,
My appointment went well and the surgeon was very reassuring. I will have my surgery in 3 steps :
1-colectomy without removal of the rectum + stoma (around june 10th, I taper my meds and get off everything then in prevision for the next step)
2-J-pouch creation (6 months later)
3-J pouch connexion , removal of the rectum and removal of my stoma (3 months later)

She told me that there is no reason why it wouldnt work and that shes had good results in cases like mine. I will have an open surgery (not laparoscopy). I will stay at the hospital for 7-10 days after my colectomy.

So now I am hoping I don't get worse until my op... I will meet an ostomy nurse and choose the situation of my stoma according to my lifestyle and clothing, and she will help me deal with my new friend at first.

I think I am in good hands :) I am very hopeful !!! This is such a hard decision to make, to have your colon removed, I kinda feel like this is a bad dream.. Ahh time will heal everything huh...
Posted 5/26/2009 7:47 PM (GMT 0)
I'm glad you had a good meeting with the surgeon and I'll be looking forward to hearing updates from you!
Posted 5/26/2009 8:26 PM (GMT 0)
Wow, that's around the corner.....I too hope all stays well until then. If you do worsen, what are your options..?

I can truly understand the feeling that you're in a bad dream...but with an ending that is so promising.

Thanks for the update on your appointment.

How are your support systems at home? How has your decision been received by family, friends, etc?

quincy
Posted 5/26/2009 8:29 PM (GMT 0)
Thank you for the update. I am happy you are so confident with your decision. I know you will be happy t o have your life back. :-)
Posted 5/26/2009 9:46 PM (GMT 0)
HI, of course I have my downers... Like right now :( I am scared of surgery and complications, it seems so big.
I have to watch for fever and intolerable abdominal pain that would mean a toxic megacolon. In that case I have to get to the ER and I will have the op in emergency. I am starting a little fever right now but I think it just fatigue , I keep the thermometer close.
My dad is very helpful and he comes at all my appointments, I have some issues with bringing him so much trouble and worry though. I have a couple of very good friends I can count on too. ANd my 4 cats are excellent at zootherapy. I am looking for a support group where I could meet people like me in my area, still looking... I have some questions about UC treatment: I was wondering do you guys have any idea why my doc didnt try cyclosporin? And is there a difference between asacol and mezavant, if mezavant didnt work does it means asacol wouldnt have either? Looks like my doc thinks that way...
Posted 5/26/2009 9:59 PM (GMT 0)
Think positive, try not to worry about the worst things that happen. Maybe all will go fine!
It must be some relief to know that before too long you will be past all the UC crap!
Posted 5/26/2009 10:07 PM (GMT 0)
Mezavant (Lialda in the US) has the same active ingredient as Asacol; the difference is that Mezavant has more active ingredient per pill and releases more slowly, so that you don't have to take it as many times a day or take as many pills. You might want to ask your doctor about giving Apriso a shot (I'm not sure if it's available in Canada, though). It's a mesalamine drug like Asacol and Lialda, but it starts dissolving at a lower pH than the others do and many people with UC have more acidic guts. But, if Mezavant didn't make any difference at all in your symptoms, then I can't see that switching to Asacol or Apriso would make too much of a difference.

Have you checked with the Crohn's and Colitis Foundation of Canada for support groups in your area?

Also, I agree with Peety about thinking positively! It helps a lot!
Posted 5/27/2009 9:28 AM (GMT 0)
Good news
I contacted a lady (my age, UC, ileostomy) who is very active in the UC related charities and organisations for support. I am waiting for her reply about support groups etc.
I will meet an ET nurse very soon she will help me find the right spot for my stoma and demystify the whole ileostomy thing. Apparently she's hilarious and very helpful :)
Posted 5/27/2009 8:02 PM (GMT 0)
You've certainly made progress regarding contacts and supports...necessary part before and after surgery recovery.

Keep us posted when you have met the nurse...

quincy
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